NICE has developed guidance on the healthcare that should be provided for people with brain tumours and other central nervous system (CNS) tumours. It recommends which healthcare professionals should be involved in treatment and care, and the types of hospital or cancer centre best suited to that care.1
Key recommendations include:
• All patients' care should be co-ordinated through a designated multi-disciplinary team (MDT)
• All patients should have face-to-face contact with healthcare professionals to discuss their care at critical points in their care pathway, and be provided with high quality written information to support this
• All patients should have a clearly defined key worker
• Patients should have ready access to specialist care services as appropriate
• Palliative care specialists should be core members of the neuroscience MDT and of the cancer network MDT
• Cancer networks should ensure that clinical trials on brain tumours carried out by the National Cancer Research Institute (NCRI) are supported and patient entry into these studies actively monitored.
The NICE guidance has clearly emphasised the role of a co-ordinator, who is overall in-charge of managing the care for this complex group of patients. However, the clinical co-ordinator's role is to focus mainly on acute treatment of the brain tumour that includes signposting the patient to neurosurgery, radiotherapy or chemotherapy after diagnosis.
As all neurosurgical centres are based in tertiary specialist hospitals, the MDT meetings focus on the continuity of care for the patients who are repatriated back to their own local hospitals to continue recovery post surgery. Those patients who are not suitable for surgery get transferred to the palliative care team.
The radiotherapist and oncologist are all involved in this stage, but clinicians from the rehabilitation team are not represented. Traditionally, rehabilitation is considered, only in the management pathway in the later stage, even though it is possible to identify those who can benefit from rehabilitation early in their management. Due to its malignant nature, some types of tumours have a direct involvement of the palliative care team both in a early acute diagnostic stage as well as a later stage after commencing treatment.
Some benign tumours such as meningioma, have a good long-term prognosis. They also have different rehabilitation needs than
glioma, the latter being referred to the palliative care teams early after initial management. This paper is an attempt to identify any gaps in provision of the rehabilitation services for these patients and to see how those can be addressed.
Role of rehabilitation
While the physical disability is obvious, the cognitive problems are not, and hence can get sidelined. Cognitive impairment and its full assessment forms an important part of the rehabilitation process. The other aspects involved in the cognitive rehabilitation are psychological support and counselling of family members.
The national service framework for long term conditions (NSF-LTC) has addressed the importance of easy access and seamless rehabilitation pathways for all neurological conditions in the community. There is no additional funding provision along with the framework.
Interface with palliative care
Palliative care services and rehabilitation pathways have a lot of common ground. The emphasis in both situations is towards managing symptoms, improving quality of life and supporting family. In addition to these problems, social issues such as power of attorney managing finances are also addressed. When offering palliative care and rehabilitation services the approach is always multidisciplinary. The NICE guidance also mentions that the multidisciplinary teams to treat spinal tumours and brain tumours should be separate. This is understandable as the expertise needed to manage the two types of tumours is different.
Living with cancer
The emotional impact of being diagnosed with a malignant condition adds to the complexity of challenges for these patients. While there are various advances in treatment of these conditions, and the prognosis for survival has improved, there is still a challenge for the cancer survivor. Emotional support for the patient is a vital part of any rehabilitation programme, and has a particular emphasis in cancer rehabilitation. Counselling services both immediately post diagnosis and after discharge in the community are essential. Loss of earnings due to ill health in the younger population adds to the burden on the family. The uncertainty of the prognosis makes employers wary of the commitment that the patient could provide.
A full cognitive assessment to measure abilities in memory, executive functions, planning and insight would give a baseline score in situations where progressive decline can occur. The role of the psychologist will be primarily giving feedback on the cognitive functions as well as suggesting the strategies for overcoming these problems. This includes visual cues for memory, use of a diary system for organisation of the daily routine or a talking watch for auditory cues. Insight into the cognitive difficulties is needed if this approach is to be successful. The family support for adjustment to life after cancer is also crucial.
Cognitive assessment often shows a decline over a given time period that could be related to additional factors such as radiotherapy or chemotherapy. Cancer charity Macmillan is running a project with the Department of Health on supporting people with cancer to live their lives with more comfort and dignity. The use of resources needs an innovative approach to create smooth pathways for neurological rehabilitation. The outcomes that are expected from the implementation of new programmes is difficult and will have to be measured in qualitative terms as the number of cases may not be significant. The inpatient rehabilitation service caters for only a small part of the requirement of patients with cancer. The vocational rehabilitation is sadly currently only available to a few.
Macmillan nurses are the best resource for providing information to neuro-oncology patients who are not able to access information otherwise (cognitive dysfunction, memory problems, psychosocial adjustments for ethnic minorities, etc). There is some evidence that neuropsychological interventions can improve outcomes for people with brain and CNS tumours. The rehabilitation can shorten hospital stays, facilitate discharge and reduce re-admission of people with brain tumours.
Rehabilitative interventions should consider the pathology of the tumour and expected course of progression, and may be preventive, restorative, supportive or palliative. Motor, self care and bladder and bowel rehabilitation are approached as in other neurological conditions, whilst accounting for tumour progression. Family involvement and teaching is paramount and also spousal relationships can be seriously affected by CNS tumours. Multidimensional scales to measure functioning that encompass cognitive, emotional and social dimensions may be the most useful scales. Few studies measure functional outcomes for patients with brain tumours in the rehabilitation setting. In summary, the rehabilitation in both patient/outpatient settings can improve functioning.
All neuroscience centres have a co-ordinator, generally a clinical nurse specialist, who can refer the case for rehabilitation as needed. He or she will also link with local palliative care services both in the hospital and community settings. A nurse specialist has skills to evaluate symptom control and explain the diagnosis to patients and family members. Many patients have secondary complications of cancer and its treatment such as hypercalcaemia, pulmonary embolism and hyperkalemia. The brain tumour complications could be optic atrophy or hydrocephalus. Family and carers need a sympathetic explaination, which often is not possible for GPs. The rehabilitation goals that are relevant for community teams include psychosocial adjustment, management of low mood related to the change of role in life. The specialist neuro-rehabilitation units are well equipped to deal with the skills needed to work with the cognitive and physical impairments, which are associated with these cases.
Certain brain tumors will need active surveillance such as repeat imaging and so surgical support is needed. There are other types of interventions such as ventriculo-peritoneal shunts for hydrocephalus that can arise during rehabilitation.
Management in older patients
Older adults present more challenges as they have many comorbidities thereby making participation in rehabilitation difficult. They are also likely to be making end-of-life decisions such as power of attorney about their material assets. The side effects of treatment regimes for cancer are more severe in older adults. However the rehabilitation needs of older adults are no different to those of younger people and the approach for the rehabilitation team should be based on each individual's ability rather than age.
Brain and spinal cord tumour patients have shown similar benefits when they have been treated with a multidisciplinary goal-based intense rehabilitation programme as an inpatient. Specialised spinal centres also have attached radiotherapy and orthopaedic services that are an integral part of any long-term rehabilitation plans for spinal cord tumours.
Community rehabilitation teams
Many community rehabilitation teams have specialised neurological teams to work with all types of neurological problems. They have good links with the specialist rehabilitation units and GPs, but do not take an active role in selecting patients on the basis of their neurological diagnosis. They do not provide maintenance therapy once discharged from their care, a typical spell of rehabilitation is around six to 12 weeks.
Day patient programme
If a day patient or outpatient rehabilitation programme is based inside the specialist rehabilitation unit, it can benefit from involvement of all disciplines working together giving an intense programme of rehabilitation. Many community therapy teams find that certain goals are difficult to achieve in the home environment. The therapeutic atmosphere of a rehabilitation unit is much
more suitable for this intensity. Group exercise sessions as well as just therapy sessions are only possible in a day patient rehabilitation set up.
If access to such a programme is available to the community teams then patients may prefer such an opportunity rather than an in-patient stay. This would give patients the advantage of being at home while still having the advantage of a multidisciplinary team approach of goal-based rehabilitation.
Outreach services for patients
A small team of a rehabilitation medicine doctor and a psychologist would be able to provide an ongoing assessment of brain and CNS tumours patients. The nurse specialist co-ordinating the tumour multidisciplinary pathway could identify these patients for rehabilitation.
The advantage of such an approach is that those patients that are lost in the system can be directed towards appropriate rehabilitation teams.
Though some similarity is seen with the approach of palliative care team, this type of service also monitors any gradual deterioration in a condition where palliation is needed.
There is a paucity of literature on the rationale, design, and content of successful cognitive rehabilitation programmes in patients with primary brain tumours. Rehabilitation for cancer patients with CNS involvement is rarely considered in the traditional sense and data on its use are limited. Published data demonstrate that patients with brain tumours undergoing inpatient rehabilitation appear to make functional gains in line with those seen in similar patients with non-neoplastic conditions.3-5
Caregivers of patients with brain tumours frequently identify cognitive impairment in their loved ones as their greatest burden, but few published studies have examined a cognitive-rehabilitation intervention for adults with brain tumours. Emotional distress and poor quality of life and also have been identified as important issues, yet they have been excluded from most intervention studies that target coping and mood. It can be said that many specialist neurological rehabilitation units can successfully treat these patients as all the required multidisciplinary input needed for other brain injury rehabilitation is similar for patients with brain tumours.
Conflict of interest: none declared
References 1. http://www.nice.org.uk/csgbraincns 2. Gehring K, Aaronson NK, Taphoorn MJ, Sitskoorn MM A description of a cognitive rehabilitation programme evaluated in brain tumour patients with mild to moderate cognitive deficits. Clin Rehabil. 2011 Mar 18 3 Formica V, Del Monte G, Giacchetti I et al. Rehabilitation in Neuro-Oncology: A Meta-Analysis of Published Data and a Mono-Institutional Experience. Integr Cancer Ther. 2010 4. Moore T, Wagner S. Caregiver and family issues for brain tumor survivors. Cancer Treat Res 2009; 150: 331–9 5. Locke DE, Cerhan JH, Wu W, et al. Cognitive rehabilitation and problem-solving to improve quality of life of patients with primary brain tumors: a pilot study. J Support Oncol 2008; 6(8): 383–89
2. Gehring K, Aaronson NK, Taphoorn MJ, Sitskoorn MM A description of a cognitive rehabilitation programme evaluated in brain tumour patients with mild to moderate cognitive deficits. Clin Rehabil. 2011 Mar 18
3 Formica V, Del Monte G, Giacchetti I et al. Rehabilitation in Neuro-Oncology: A Meta-Analysis of Published Data and a Mono-Institutional Experience. Integr Cancer Ther. 2010
4. Moore T, Wagner S. Caregiver and family issues for brain tumor survivors. Cancer Treat Res 2009; 150: 331–9
5. Locke DE, Cerhan JH, Wu W, et al. Cognitive rehabilitation and problem-solving to improve quality of life of patients with primary brain tumors: a pilot study. J Support Oncol 2008; 6(8): 383–89